I think I'm turning a corner, coming to terms with the sadness of Alzheimer's in a new way. I've said from the beginning that Abe and I are just living in a different kind of normal, but certainly there is a standard Normal just as there is a standard morality (well, that's getting into shady territory too. One person can not tell another what's right and wrong, except thou shalt not kill, I suppose). It’s not "normal" to forget all you’ve ever known - especially your professional knowledge base - or where you live or the directions to the bathroom inside your own home once you’ve found it or who you are. And he knows who he is. Who I am. Who the people who come to see him are.
A few weeks ago, I wrote that Alzheimer’s need not be a death sentence, that other parts of us are as valuable as the mind. They mean too. The personality, the spirit: the sweetness and goodness that still are. The sense of values. The belief or un-belief in god and the Democratic party. But today I realize and admit that Alzheimer's is a death sentence.
It is. It takes the mind, steals it from the self. I generally make the best of life's exigencies and that is good; but in another sense I am guilty of denial, saying everything is ok when it’s not, that I can handle this – and I can even when I can’t, but to expect myself to go on with the ordinariness of life is pushing it.
I guess this is why doctors and social workers screamed nursing home, nursing home, assisted living facility assisted living facility. Fear of caregiver burnout. And that’s true, more than just possible; it’s true.
Still, I want something in between: more people on board, more folks not to give up on him, on us. I actually find it harder to deal with people we run into who say, “Oh, I must call you. We’ll do lunch,” then run away than I do confronting this disease. Isn’t that funny.
I never dreamed I would be so disappointed in people; and actually now that I'm writing once again I know that Alzheimer's is really only a death sentence when other people make it so.
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6 comments:
Hi Esther: it was good to see you and Abe at the concert.
And good to see you, as well:-)
Esther,
For a long time now, some of us in class has wanted to have a potluck at your house so we can socialize more. I have not attempted organizing it because I am not sure I can make it happen successfully but I am willing to try if you would like us to all come over. I think it would be really sweet.
Barbara
Sure, how sweet, love to have you.
I wouldn't worry about successful; the word is not in my vocabulary.
Esther,
OK, then I will take it out out of my vocabulary too and we will forge ahead!
B.
Let's talk before you do a lot of planning--about how many people at one time, for instance. Call me:-)
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